Be optimistic: It’s the best droop therapy.
– Frank Tyger
M
y son sits across the aisle from me, his whole body beaming with anticipation. Playfully he puts on the headphones handed to him by the stewardess. He turns to me and signs, “I didn’t know there were movies on planes.”
I just smile, wanting to laugh - and cry.
Kevin is a handsome, blond, blue-eyed fourteen- year-old who has been deaf since birth. But throughout his life, I have tried to teach him not to give up. And he hasn’t, excelling in both academics and sports.
In the fall of 1997, I received a phone call from his teacher. She suspected that Kevin was having problems with his vision. We took him to the doctor and they told us that he had Usher’s syndrome. His peripheral vision will get narrower and narrower until, eventually, he will be completely blind.
“How? This can’t be true,” I cried. How could my dear, sweet son be both deaf and blind? It was incomprehensible to me.
When I was finally able to muster up enough courage, the counseling staff at his school helped me break the news to Kevin. He sat quietly, paying close attention to this diagnosis - a deaf person’s worst fear.
He is a brave young man, but from his body language, I knew that he wanted to cry. However, he made sure the tears waited. With all of his strength and smile he simply asked, “Can I please go back to class now?”
Kevin’s world was closing in on him, and I struggled against the rage and injustice of it all. A short time later, after putting some of my anger and fears of the future aside, I asked Kevin, “Before things really change, what one thing do you want to see more than anything else?”
He thought for quite a while and then said, “A volcano... I want to see a volcano in Hawaii.”
I choked back my tears and responded simply, “I’ll see what I can do,” all the while knowing that short of a miracle, there was no way I could take him to Hawaii.
I spoke to everyone and asked everywhere, and just when I was about to give up on Kevin’s dream, I heard about an organization that works to fulfill the wishes of chronically and critically ill children. So with great hope, I crossed my fingers and phoned them.
In a couple of weeks, we were interviewed, and three months later we were sitting on the plane bound for Honolulu.
On the morning of the big day, we climbed into a helicopter and headed toward the volcano. We were all excited. While hovering over the cinder cone, we could see the vibrant red, yellow and orange colors sluggishly moving around. We could feel the immense heat on our faces. We could smell the pungent stench of sulfur seeping in. As we hovered, I was struck not only by the volcano’s raw beauty but also by its strength, and I thought of Kevin’s strength.
Looking over at my son, there was a peaceful glow about him. I tapped him on his shoulder. I wanted him to look back so I could sign and ask him what he was feeling. He signed back, “Not now.., if I look away, I’ll miss it.” He was right. He needed to see all he could see - now.
Kevin had an offering for Pele, the fire goddess. It was made of tea leaves, her favorite, and a symbol of good luck. He stuck out his hand and dropped his gift. Then he bowed his head and signed, “I wish she can be strong for an eruption.”
As we watched the leaves fall into the lava, the most amazing thing happened. The sluggish mixture began swirling around and started popping - a tiny eruption began before our very eyes - Pele’s gift to Kevin.
We brought some lava rock home. Every now and then, I catch Kevin sitting with the same peaceful glow he exuded in the helicopter that day. When I look a little closer, I notice the small piece of lava rock in his hand.
I pray that our journey will last forever in his mind’s eye, especially when the disease finally consumes Kevin’s eyesight. Then I’ll know that my son still sees the swirling hues of red, yellow and orange, and not just blackness.
– April MacNeil